Health data use, stewardship, and governance: ongoing gaps and challenges: a report from AMIA's 2012 Health Policy Meeting

TLDR

Large amounts of personal health data are collected and made available, offering potential to advance research, improve care, and lower costs, but policy challenges such as stewardship principles, data silo reduction, and privacy protection must be addressed. AMIA’s 2012 Health Policy Meeting convened academics, policymakers, and stakeholders, including patient representatives, to discuss these issues and develop recommendations. The review of Proposed Principles concluded that health data should be treated as a public good and that realizing its benefits requires patient understanding and support.

Abstract

Large amounts of personal health data are being collected and made available through existing and emerging technological media and tools. While use of these data has significant potential to facilitate research, improve quality of care for individuals and populations, and reduce healthcare costs, many policy-related issues must be addressed before their full value can be realized. These include the need for widely agreed-on data stewardship principles and effective approaches to reduce or eliminate data silos and protect patient privacy. AMIA's 2012 Health Policy Meeting brought together healthcare academics, policy makers, and system stakeholders (including representatives of patient groups) to consider these topics and formulate recommendations. A review of a set of Proposed Principles of Health Data Use led to a set of findings and recommendations, including the assertions that the use of health data should be viewed as a public good and that achieving the broad benefits of this use will require understanding and support from patients.